Developing a Sickle Africa Data Coordinating Center (SADaCC)

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Project Summary/Abstract (30 lines) It is estimated that 305,800 babies are born each year with Sickle Cell Disease (SCD) worldwide with nearly 75% of the births occurring in sub-Saharan Africa (SSA). Despite this high incidence, there are currently no effective public health programs in any SSA country focused on SCD. As a consequence, up to 90% of infants with SCD in SSA are believed to die by five years. Evidences from the West indicate that the institution of interventions such as newborn screening and penicillin prophylaxis are credited with the ~70% reduction in mortality rate among children with SCD. However, the death rate in adult SCD patients in the US has not improved, due to additional debilitating complications. There is therefore a major need for research to help develop effective therapies across the life span for SCD in all parts of the world. Longitudinal cohort studies are the most scientifically rigorous methods in understanding of, risk factors, and health and disease outcomes. High disease prevalence in SSA would be expected to facilitate epidemiologic, translational, and clinical research studies on SCD, similar to Framingham Study for the heart. This U24 application is seeking to establish a Data Coordinating Center (DCC) to be called the Sickle Africa Data Coordinating Center (SADaCC), to support the activities of a companion SCD Network in Africa. This overall objective will be accomplished by four specific aims: Aim 1: To provide overall coordination and administrative support that will include development and maintenance of operating procedures; creation and management of SCD Ontology. Aim 2: To create and ensure maintenance of a centralized, electronic sickle hemoglobinopathy database that will include development of protocols, including appropriate consenting procedures and provision of data management and bioinformatics skills. Aim 3: to provide biostatistical, study development, analytic and medical expertise. Aim 4: to provide 2 year development phase, and 1 year pilot/planning phase and a 1 year implementation phase. We believe that our team’s a) prior experience, as a coordinating center, of the activities of the H3Africa Consortium, b) the outstanding institutional environment at the University of Cape Town (UCT), c) the long experience of the UCT Clinical Research Centre in research/data management and H3ABioNet in bioinformatics capacity development, and d) our track record in basic, translational and clinical research, and training focused on SCD in SSA, augurs well to establish the most effective DCC for the SCD consortium.